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  • All about Gertrude

    Gertrude is the name we decided to call my cancerous breast hence the title of this blog. Although I had to keep my breast through chemo and radiation due to the nature of IBC - once it 'blew up' it no longer looked like my breast and I couldn't wait to get rid of it. Calling it Gertrude was a way of seperating it from myself. This main page is where I write about the general goings on that relate to Gertrude, there is another page that are more a diary of treatments etc This blog is a public blog so although I am being very honest about my battle with Gertrude I have "changed names to protect the innocent" - because everyone can see it if you write comments on the blog pages please use the same abbreviations for other family member or friends that I do. Please feel free to ask questions if you want clarification because then other people who might have been wondering the same thing can read your question and our answers.
  • Abbreviations

    OH- Other Half (Hubby), OD- Oldest Daughter, MD- Middle Daugher, YD- Youngest Daughter, SB- soulja boi MD's fiance in the army (now ex fiance), OD's R OD's partner, BS- Breast surgeon whose initials just happen to be BS as well, BC- our GP (family doctor), Dr H- my medical oncologist, all other friends family etc will be referred to as initials etc
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  • SUSAN’S ARMY

    No Princess Alone button

Decison time

Decisions…Decisions…Decisions….

These last few weeks as well as being involved in ODs wedding, I have been thinking long and hard as to ‘where to from here’.  Decisions have been made and discussed with the family.

On Wednesday I met with Dr H and told him of one of my decision.  That I wanted to stop chemo.  The peripheral neuropathy (nerve damage) was becoming debilitating and very painful. As I explained to someone it is like when you have had really cold hands – on the verge of frostbite when your circulation has stopped – and then as you warm your hands up and the circulation kicks in they become excruciatingly painful  – that’s what my fingers feels like all the time.

He wasn’t that surprised and was supportive of my decision.  As we had already discussed with the registrars the two visits prior, the neuropathy was going to be one of the deciding factors in whether I stayed on it.  At most I was going to have 6 cycles, another 6 weeks as I’ve had 4 cycles already, of Taxol.  He said he thought the Taxol had had some effect on the cancer as evidenced by my tumor markers dropping but he really didn’t think staying on it for another 6 weeks was really going to change the amount of control, and how that was going to play out in the long term.  My tumour marker had fallen again to 174.  He is hopeful that it will fall again in the next month or so while the chemo is still in my system.  He agreed that now it is more about quality of life.  As I said to SisM if he had tried to convince me to stay on the chemo I may have been swayed by his arguments as I trust his judgement a great deal where my treatment is concerned. The fact that he didn’t try and dissuade me at all reassures me that I am making the right decision, for me, at this time.

I know some people may view this decision as me giving up hope but it is not. It is me taking control of how I want to life the rest of my life.  It is about me having some really good quality of life before the tumours grow and impact too much on my liver function.  Being on Taxol has just made me feel tired and ‘crap’( slightly nauseous, off my food, and just generally blah) as well as the pain from my fingers all the time and I need to reclaim some normality.  Although it will be a few weeks until the chemo is totally out of my system, I am starting to feel better already.  I’m still tired but I don’t feel as ‘crap’ as I did.  It’s about feeling up to doing activities with family and friends and enjoying my life a little more than I have been.

The other big decision I have made is that I will not go back to university next semester.  As much as I love it I want to put my energy into some other things.  With this last semester all my energy has been used up by Uni, and chemo, with very little left for anything else.  Even though I have only been doing one paper the travelling time on the train, having to catch a 7.15am train in the mornings and spend an hour and a half travelling each way including bus and walk has worn me out.  Hopefully with being off chemo and without Uni I will be able to prioritise some of the other things on my ‘to-do-list’ and get them done.

Depending on what happens – in the unlikely event my cancer stabilises, I can always revisit this decision later on.  But for now, knowing that Taxol was the last chemo to try and that ‘Gertrude’ will probably eventually take over,  I am going to get back to enjoying my life without it being ruled by chemo, blood tests and uni each week and be able to wake up in the morning and say what do I WANT to do today.

I might even have more time and energy to write blog posts and let you know what I am up to.

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13 Comments

  1. Thinking of you.

    Reply
  2. Christine Williams

     /  June 8, 2012

    I know I havent been around much but I do read all your blogs and think of you often. Well done in making the decision that you have. Draw strength from your family and friends and be proud of everything you have achieved.

    Reply
  3. Jayne Muir-james

     /  June 8, 2012

    …beaten down & your right back up again. Quality time is what is important ( its what we all desire) and yes each new day will be your reward. You are an inspiration.. And YOU is what’s important.

    Reply
  4. Sis M

     /  June 8, 2012

    Yes, be proud in what you have acheived to date. Be reassured that your extended family is with you in thought at all times and there for you when you need us anytime. Luv & hugs.

    Reply
  5. Good to hear that you are now going to wake up each morning and decide what you WANT to do. You have told Gertrude I am in control for now. Quality of life is so lost at times. Enjoy,indulge yourself and OH.

    Reply
  6. Totally understand your decision. I too took the quality of quantity sept last year from being so sick from the capecitabine. Luckily, 3 months after I was found anothe treatment, which didn’t work and again I am waiting to start another new trial drug. I think it comes to apoint that we look around and alwatxh our loved once and have the urge to be part of what they are doing, to get involved and to get and about places. Even though the capcitabine was working for me, I has to weigh up the pro’s and cons hitch finished up, I would rather live 3 months of a good quality of life rather than 20 yrs as a bed ridden veritable.

    My heart and prayers to out to you, keep strong becuas you are such a lovely lady. Big hugs. Xx

    Reply
  7. BRO

     /  June 8, 2012

    R & I think of you often – as I said on the phone the other night, think positive & you have 1/2 the battle won – your quality of life is definitely better when you look on the bright side !

    Reply
  8. Much love to you on the heels of your decisions. You are NOT giving up and if anyone says so send them my way for reprograming.

    Love
    Katie

    Reply
  9. extremeparenthood

     /  June 8, 2012

    I, too, love that you are going to wake up every morning and ask yourself what you WANT to do instead of what you HAVE to do. Unless, of course, you wake up and realize you simply MUST HAVE sushi. Because that is completely acceptable and must be done. ;-)

    I’m saying healing prayers of comfort for you, my friend. Comfort and lots of sushi.

    Reply
  10. I hope the neuropathy leaves your body asap.And yes, we’d enjoy reading more about what you’re up to!

    Reply
  11. Hi, I just discovered your blog last week, and I’m writing from the other side of the world (New Jersey, USA) to send my respect and best wishes to you. I work in a nursing home and wish so many more people would allow hospice to improve their quality of life. Major props to you for taking this thoughtful course. Your strength is inspirational. With best wishes for your health, Pat

    Reply
  12. I send you love. Lots and lots of love. And I want to see a tweet or two in the stream. Always time for 140 characters…. Just a smartphone and a thought and I can get some updates about what I hope will be fun and mischief…..
    xoxox

    Reply
    • unfortunately I dont have a smart phone but I can tweet by texting my tweet to a special number. and I have any tweets that mention me come through as messages to my phone as well. Its pretty good but makes it harder to repy to people though :)

      Reply

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